Around the world, charities and other awareness movements are giving rise to more education, support, and fundraising for this common disease. To date, endometriosis impacts an estimated 176 million women across the globe, with nearly 2 million in the UK alone. Endometriosis can have a drastic, negative influence on an adult woman during her most reproductive years, and impacts are far-reaching in terms of societal, economic, and personal costs. Having a month dedicated to endometriosis and the women who live with the disease is necessary for creating a louder, stronger voice meant to make a difference in endometriosis diagnosis, treatment, and research.
Understanding the Complex Disease
One glaring reason endometriosis needs increased awareness throughout the world is the reality that the disease is widely misunderstood and therefore, inaccurately diagnosed and treated. Women with endometriosis experience tissue typically found in the womb growing in other areas of the body where it should not be. Because womb tissues elsewhere still functions for the purpose of becoming pregnant – that is the shedding of tissue each month – it can and does cause severe problems for women. The growth of tissue outside the reproductive organs has nowhere to travel, and as such, it leads to mild to severe pain which can be debilitating.
Endometriosis may not sound complex on the surface, but the fact that it has no singular cause and highly varied symptoms among women make it more difficult to diagnose correctly. A group of clinical negligence experts in the UK shares that on average, it takes just under eight years to receive a proper diagnosis and course of treatment for endometriosis, despite its high prevalence among adult women. This is often the case because the symptoms range in severity and persistence, depending on where the abnormal tissue growth is present. Some women may only experience pain during sexual intercourse, while others have above average menstruation pain. Endometriosis is also known to cause problems with food sensitivity, bowel movements, fatigue, infertility, and depression, but receiving the right diagnosis is easier said than done.
Diagnosing endometriosis is currently only possible with the help of laparoscopic surgery, typically performed by an endometriosis specialist. The operation involves a key-hole incision in the woman’s stomach and probing for tissue growth outside the reproductive system. When abnormal tissue is found, the specialist removes it when possible. However, the identification of womb tissue growth and its subsequent removal isn’t a step most GPs take when women present with symptoms that may be linked to endometriosis.
Instead, women are told they have other, more straightforward conditions, like irritable bowel syndrome for those who suffer from a food sensitivity or bowel movement issues. Others may receive a diagnosis of an STI or urinary tract infection when endometriosis is the real culprit of their symptoms. In the worst cases of misdiagnosis, women are turned away without any information, saying that the excessive pain they feel or other symptoms they experience are a figment of their imagination.
Breaking the Stigma through Awareness
Despite the fact that endometriosis is just as prevalent as other common health conditions, like diabetes and heart disease, there is little funding and less research focused on gathering more information about the risk factors, causes, diagnosis, and ultimately treatment for women. Endometriosis Awareness Month exists for this reason. Throughout March, patient and women advocacy groups, medical professionals, and the women living with endometriosis band together to achieve the following:
- Promoting a greater awareness and understanding of endometriosis as a real, debilitating disease
- Highlighting the negative impacts of living with endometriosis
- Increasing training and knowledge among the medical community
- Improving efforts in timely diagnosis and treatment through research
- Giving an opportunity for the public to get involved in specialised endometriosis awareness events
Many local charitable organisations have compiled detailed calendars, educational resources, and data sheets on endometriosis, along with easily shareable information for social media and print campaigns. Each organisation also receives individual and corporate donations throughout the month and the remainder of the year to increase funding for endometriosis education and research.
Everyone who has been impacted by endometriosis, from women diagnosed with the disease to family members and loved ones who have cared for or supported someone with the condition, is encouraged to take part in whatever way possible during March. It is the simplest way to take away the stigma of endometriosis, break through myths, and create a community that provides support and encouragement to those who have yet to find the right treatment.
